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Hi.  I'm new to the forum.  My 2 kids have crohns and have had for a couple years.  we started in the beginning with pentasa and immuran, but it didnt work very well them.  My daughter especially is very under weight and height--so when I found out about a therapy that didnt use harsh drugs called enternal nutrition therapy I thought this would help her grow.  for those who dont know what ENT is, the patient receives daily calories and nutrition through an NG tube that they insert themselves through the nose every night and with a pump the fluid is delivered.  We've done this since March and after visiting our new doctor since moving, the growth results in my children were a little less that what was expected.  Also, they are suffering symptoms indicating that the treatment isnt effective enough.  The new doctor wants them to start remicade after new scopes have been performed and I'm scared to death to give them such harsh drugs such as this one.  Does anyone have a positive story to share about their child taking this and doing well and going into remission?  I've read a lot about controllling the disease with diet which I'm all for, however, my kids have a hard time sticking with it since they would be restricted on so many levels.  I'm scared that the side effects will be difficult on their bodies.  I asked the doctor about controlling the disease with diet and she says that we have to get the inflammation under control first.  She said that even before she had current bloodwork results.  I'm so frustrated with the options. I wish I didnt have to give into remicade.  We managed to avoid it for some time.  Thanks for reading.
Heather

 Reply posted for terintx.

Interesting! Thanks so much for the info. I will definatately look into it. I'd never heard about a methylated folate and B12. She's been having behavioral issues as well so your reply has been very helpful.

 Reply posted for madreoftwo.

To be perfectly honest, I had no idea about it myself. My good friend, who was also my son's teacher in 4th grade told me about it. She knows a lot more about it than I did, and still does. What i do know is that these mutations cause you to be unable to metabolize most forms of folate. This folate deficiency can manifest in many different ways. Usually it takes 2 mutations to be serious enough to experience problems. But when you are on meds that also suppress folates, or are compromised in other ways - like malabsorption, 1 can be enough to cause issues. If you have a mutation, that should be enough justification to have them checked for it. At the very least, it will help you decide how to manage their treatment. We just added 400 mcg of Methylated Folate and Methylated B12 to my son's supplements and he's right as rain. Not only did it stop the behavioral issues that as common with folate deficiency, but his anemia resolved. People with MTHFR need to be using the methylated versions of folate and B12, as they can't process it otherwise. 
If your peds GI doesn't know much about the mutation, ask them to research it. 

 Reply posted for terintx.

I noticed you mentioned an MTHFR gene mutation. I have homozygte MTHFR mutation. My daughter is the one with Crohn's. Can you explain a little more about the MTHFR connection. I've never had either of my children do any genetic testing yet. (I also have a 13/14 chromosonal anomoly so they're going to need checked eventually). It just really surprised me to hear you mention that.

Thanks!!

 Reply posted for heatherflorida.

My son has been on remicade for 2 1/2 years. He is in remission. He has not experienced any side effects from it. He is now in the 65th percentile for weight and 70th for height. This is still low "for him", since he was over the 97th from birth until he developed Crohn's. But certainly better than it was when he was at his sickest. We did have to add methotrexate about 1 1/2 years ago to boost the effectiveness, but he's still doing well. We have a home health care nurse come to the house and do the infusion, so he's very comfortable while undergoing the infusion. He still takes the Pentasa too. he also takes
Enzymatic Pearl
S. Boullardii 
Iron
D3
Metholated Folate 
Metholated B12
Xantac
Zyrtec (for seasonal allergies)
Pentasa
Methotrexate

This combo is working very well for us. Have your girls been checked for the MTHFR gene mutation? If you put them on any folate inhibitors (like methotrexate) you should def have it checked as it can cause serious folate deficiencies. 

 Reply posted for heatherflorida.

My daughter was also dx w/"failure to thrive" prior to being dx w/cd.  Her height and weight were so hindered she wasn't even on the charts.  Once we were properly dx w/cd and began treatment w/meds she started to flourish. We were fortunate that her dr believe in the bottom up treatment (started w/the least invasive and work your way up). She has been treated in the 5-asa category since dx just over 10 years ago - my daughter is now 14.

I'm wondering if your dr. would be willing to work a bit with you, often it takes multiple tries w/multiple meds to get the right combo that works best. Perhaps Pentasa w/a short course of steroids just to get the flare under control and see where it takes you. I have heard of the ENT therapy and some people do very well. You may be able to continue with that for added nutrients/calories coupled with hopefully a lower tier drug??

We worked with a nutritionist in the beginning and learned a lot about adding calories in to each meal and pinpointing the culprits that simply don't agree w/Liz. I know how frustrating things can get since we are the parents and just want to do the best for our kids w/o jeopardizing them in the interim.